Disability benefits

[paddy67]

Hi everyone, I am in the process of applying for PIP, just wondered if anyone has previously applied for this benefit when diagnosed with PMR ? How did you get on ?

Thanks

Paddy

[Rose54]

Hi I tried some years ago and was refused

At that time I was working and completing PIP forms for customers so knew what thay wanted .

I did not bother to appeal as if I was honest I agreed with them .

But give it a go you have nothing to lose

[DorsetLady PMRGCAuk volunteer]

Sure there are a few who were/are successful. I tried many moon ago with GCA -no go! But if you don’t ask you don’t get…

[PMRpro Ambassador]

One obstacle is the generally held view that it can be well managed with medication - which in truth it can for most people.

[pog165g]

have tried twice and refused both times, if you want pip you have to lie at every stage they know if you have a disability you will be honest about it, if you tell them you have good days you will not get it

[Telian in reply to pog165g]

You have to give the worst case scenario for every day. My sister wouldn’t do that and couldn’t even get a blue badge. She had a terminal illness and died before she had her appointment - for them see how bad she really was! You have to speak up for yourself.

[PMRpro Ambassador in reply to Telian]

That was what happened to us - they rang to ask could they come to assess him for the care support grant the following Tuesday and I told them they were welcome if he was still alive. He died on the Friday.

The cheeky lot didn't bother to ring me to say that as he had died they wouldn't be coming so we got up early and sat around waiting - though how they knew is beyond me, it had been late Friday when he died and Monday had been a public holiday! The claim was extended to post mortem and in the end it was a phone call assessment. Why couldn't it have been that in the first place? Still don't have the money - it is now part of his estate.

[Telian in reply to PMRpro]

I remember you telling me this. It’s an absolute shambles as far as I’m concerned. The genuinely ill aren’t up to these fights. My sister’s assessment was the day of her funeral. Hope you’re coping. 🌺

[PMRpro Ambassador in reply to Telian]

It's fine - until I get the next drip of bureaucracy to deal with!!! Any form to fill out and I'm a wreck ... Learnt to print, copy and scan last week! Scanning meant identifying which option worked - and then remembering what I'd done the next time ...

[Telian in reply to PMRpro]

My brother in law is going through the same. I’m with you on the form filling. You’re doing well having to deal with it on your own. BIL received paperwork re my Sis’s pension forecast which was ridiculously wrong and when he rang up - after holding on 45 mins - they couldn’t speak to him because they knew her! Fair enough but why is no one getting back to him as promised. My sister’s pension is with the company she last worked for and they arrange pensions including hers! Is that a reason for the black hole! He decided not to go back to work as it’s done his head in. He is 70 this year and was tootling along.

[PMRpro Ambassador in reply to Telian]

Was she still working then? What annoyed me was we called NHS pensions on Nov 2nd - and they did put it in the computer - but no-one noticed an error notice. I managed to work out the digital banking bit in Feb and realised his pension was still being paid so called them to tell them. The woman told me I had to claim my survivor's pension with marriage certs and god knows what. I only have one copy - and post between here and the UK is crazy, don't want it to disappear. So I rang again - and got someone more sensible! I don't need all the proof stuff, it was all set up at the same time as the pension in 1990. But I did need to submit a witnessed claim form and a death cert. So I had visitors last week - skiing up the valley. He was eligible to do the witnessing and took it back to post it in the UK, cutting out one bit of uncertainty!

Just as well I don't need the money urgently - the German part of his pension is also somewhere in the ether - they claim they sent it out at the end of January to the local agency that does these things!

[Telian in reply to PMRpro]

No she retired 4 years earlier but she worked in insurance latterly and apparently that’s how the ‘hands tied’ situation arose as she knew all of the teams. They’ve escalated it as there will be someone lurking that didn’t know her. Still waiting!That was a stroke of luck, and such a relief, you having someone to take the precious paperwork back. I often wonder why there’s such a difference in protocol depending who you speak to. It’s a blessing you don’t need the money. You do have to keep chasing as it’s whoever shouts loudest syndrome…On a different note our son in Oz is downsizing and in a few days he’s sold his house and had a provisional moving date the next day. He bought another property on Monday this week and the sale is unconditional this coming Monday. So sensible. Why do we have to suffer all the stress of bureaucracy in this country I’ll never know. I know the work piles here are so high staff just wade through it in order - unless you chase! I was told this only last week over something else I was chasing. Covid hasn’t helped.

[PMRpro Ambassador in reply to Telian]

No, I wondered if it was a death in service complication. All that aspect of the payouts was long gone with OH's pension and it had been allocated to me originally.

Once your offer is accepted in Scotland - job done legally speaking. The purchaser bears the costs if they decide to pull out or delay if you don't agree. It is so much easier in terms of stress. We bought in Germany many years ago and were living in the house long before we had to hand over the money - but all legally watertight. Here was relatively easy too - although the house builder was worried it needed to be a notary who spoke English (expensive no doubt!) until he realised our German was good enough and we'd been through the process before.

[Telian in reply to PMRpro]

No, she retired as soon as she could! OH’s pensions will be allocated to me too. Am totally unaware of paperwork requirements - don’t want to know yet. I was aware of Scotland and after our move here two years ago wished our system was easier. Then Oz being sensible made me think again. I never went to move again. Good for you learning the language. Blessing in disguise.

[PMRpro Ambassador in reply to Telian]

We came here because we already spoke German - wanted to live in a German-speaking region but not necessarily Germany where we had lived before. The weather is immeasurably better here on the south side of the Alps!

[pog165g in reply to Telian]

one of their reasons for turning me down was the fact that i could drive they said that driving was in its self a complex task so i did not qualify, my reply was if that is so why do you give out disability cars i did not get a reply.

[Telian in reply to pog165g]

You hit the nail on the head there!

[Pixix]

Yes, but totally unrelated to PMR. I had four car crashes & have fibromyalgia & a tumour on my spine , inflammatory arthritis & a bad hand & arm tremor. When I got diagnosed with PMR I informed them (you have to phone them if anything changes in your condition), & they asked questions & said it’s noted on my files (but not relevant, just giving a fuller medical picture). I certainly wouldn’t claim for polymyalgia alone, but it’s a personal choice. I fought being ‘labelled’ disabled for many years, but had to accept help in the end. You are not necessarily disabled just because you have polymyalgia. The steroids should be solving any issues of disability, I believe. So many people lie in their responses, which has lead to much to stricter rules, as it changed from DLA to PIP. I had a two hour meetings with doctor to determine if I am actually physically disabled, (not sick with an illness like PMR)…very very thorough physical exams & tough discussions…they apologised & explained it’s because many people try to get the allowance who do not meet the term ‘disabled’. If you need money & can’t work because you have PMR there are other allowances, I believe. You will see that Rose54 above is honest & says she didn’t meet the criteria. Sorry for long reply, but hope it helps. I feel quite strongly about this issue, tbh. I even know people who lied & are gleeful because they ‘got the money’. With all I have & with all the help I now need, I only just meet the very bottom line score & scrape through. If you need money to support you, you can contact citizens advice & see if you can get a different allowance. I use the money to pay other people to do things I can no longer achieve due to disability. I hope this helps & doesn’t sound too bolshy. I don’t mean to be, & I don’t know you. You may be disabled. Please take this in good spirit. But if you only (I mean you don’t have other diseases/injuries) have PMR or GCA, & your symptoms are mainly under control, Then are you really ‘disabled’? I don’t have the answer…!!

[S4ndy]

benefitsandwork.co.uk/

Well worth the membership fee. Excellent guides to help you complete your PIP application and to explain how your illness/disability affects you. I've used them for 6 years to help me complete PIP and ESA forms.

I have other joint problems as well as pmr and have been awarded PIP and ESA. I am unable to work. I first claimed in 2016 and have done 2 reviews using the guides to help me.

The process is very stressful and designed to stop people getting an award, a true hostile environment. If like me you cannot work then you need to claim what you are entitled to. Age UK can help you complete the forms as can Citizens Advice. Also if you happen to live in social housing your housing association may well have a dedicated benefits adviser.

Hope you are able to make your claim successfully. Don't give up and be as honest and detailed about how your illness/disability affects you as you can.

[Sharitone]

Hi Paddy. I used to do appeals for people who had been turned down for

PIP. One of the problems you will have will be proving that you are likely to have PIP-level needs for at least another 9 months. When you fill in the form, you need to look at their points scheme

citizensadvice.org.uk/Globa...

and tailor your answers to it fully describing the effects of your disease on that particular activity. For the activities that cause you most problems, you will probably fill up the entire box.

Points are not given for anything else, so there is not much point in elaborating on things unless they attract points, usually when you require help from another person or aids such as grab rails.

If your initial application fails, make sure you get the Mandatory Reconsideration request done in time, and then get help, unless you are very confident!

[Sue_n]

Yes I did and got it. You have to embroider the questions as one double checks the other. It is points system based. Have major problems with my spine and slipped disc but afraid to go back in to get mobility part in case they take away what I have got. The system changes in April to ADP.

[Tahiri in reply to Sue_n]

What is ADP ? I’ve not heard about this yet .

[PMRpro Ambassador in reply to Tahiri]

dailyrecord.co.uk/lifestyle...

May only be in Scotland

[Tahiri in reply to PMRpro]

Thank you - very informative. I had no idea about changes. In my case , it should mean a transfer of the current award I think.

[PMRpro Ambassador in reply to Tahiri]

Are you in Scotland?

[Tahiri in reply to PMRpro]

Yes . I hadn’t heard anything about changes , but since my award is ongoing, I don’t think that there should be much difference. I would imagine that new claimants will face extremely stringent tests though.

[Omanain]

My son receives this for a totally different condition, but I know that to be successful you need to emphasise how it affects you mentally and emotionally. Physical symptoms alone never work. Good luck !